I think I have LE

Lynda--She's quite qualified--there was a weird insurance ruling about 5 years ago and it stopped MD's and RN's for getting reimbursed for lymphedema--so this woman has also trained as an LMT--a licensed massage therapist, and she's met the qualifications for LANA--which are high. LANA is a test, but you have to be thoroughly trained to take the test.

My personal LE therapist is "just" an LMT--but incredibly well trained. I have to pay her out of pocket, but it was close to my co-pay and she's worth every cent--she's an LMT, LANA certified, Klose and Vodder trained.

Diane--they're sure your mother doesn't have a seroma? They can ultrasound for that. If not, some of the women here, with truncal lymphedema have had swelling under their arms. You might want to see her breast surgeon and get an ultrasound, and make sure this isn't a collection of fluid.

Hope she feels better.

Kira

Boobsinabox, Kira and Binney;

Thank you all for your responses and kind words.  Thank you for the link Boobsinabox (love the name)!  I will definitely check it after I leave here.  Kira, the oncologist didn't mention a seroma. She really didn't have much to say about it other than acknowledging the swelling and hardness. After she checked mom's underarm, she set up the appointment with the lymphedema clinic.  Mom has an appointment there after Christmas.

Mom hasn't had an easy time of it with all of the surgeries and a stay in the hospital due to complications from her port surgery.  I was really hoping she wouldn't have anything else to worry about for a while. 

Lynda, feel free to "go on about this" as much as you need or want to. It's confusing and frustrating and even a bit frightening, and not being able to get good information makes it even more stressful. We all tend to blubber on about it, as you can see!

You're not jumping the gun! You can wake up from surgery with lymphedema or develop it 15 or 20 years later, so the timing is no issue at all.  As for there being only six nodes removed, several of us here had fewer than that or developed it after prophylactic mastectomy with no axillary nodes removed.  The fact that your arm "feels funny" is more than enough reason to request an evaluation by a well-qualified LE therapist (like the one you found). It will either start you on the right foot toward LE risk reduction if you don't have it yet, or get you started on LE treatment promptly, which is the very best way to control it on into the future. Win/win!

There aren't any tests to determine if you have these conditions (if you have AWS you may be able to see or feel the "cords"), but sometimes doctors do tests to determine it's not something else (doppler to rule out blood clots or imaging to rule out tumors for instance). A well-trained lymphedema therapist will be able to tell you if it is by history and physical exam.

I can't think of any questions to ask your onco's nurse, because she's not the medical professional who treats this. But do let us know what she has to say.

Be well!
Binney

Lynda--great picture of beautiful Kiera. Great news! Mondor's is a variant of axillary web--usually involves the breast more.

Not all LE therapists feel comfortable stretching the cords.

Did you mean "tape" your arm, or use a sleeve/gauntlet? There is no real solid advice for what to do when you're at risk, but don't have lymphedema re: air flight and compression garments, but if you do get a sleeve/gauntlet, make sure it fits well, and wear it before the flight to make sure.

Great news about the gene,and so glad you'll be seeing your family.

Kira

Lynda--please avoid ACE bandages--they have too much elastic and can harm your arm. When lymphedema wraps are applied, they are "short stretch" bandages--with little elasticity, to avoid putting too much compression.

I work in radiation oncology, and the head rad onc thinks he knows about lymphedema, and then tells the patients to use an ACE wrap--and I have to run in there and say "NO WAY!"

Even though this isn't lymphedema, you want to avoid extremes of heat and cold, but some gentle moist heat will ease some of the cording.

On the stepupspeakout site, there's a section about what to do while waiting for your first LE therapist appointment:

http://www.stepup-speakout.org/How_You_Can_Cope_with_Lymphedema.htm#while%20waiting

What to do While Waiting for Your First Appointment with a Qualified Lymphedema Therapist
DO NOT try and treat this yourself!!! Proper professional treatment is essential to getting control of lymphedema and preventing its progression. Treatment can be expensive and inconvenient, but this condition is life long, potentially disfiguring, disabling and possibly life-threatening (if you get an infection known as cellulitis) so professional evaluation and treatment as soon as possible is essential.

1) Get evaluated promptly by your doctor to rule out other causes for the swelling in your hand/arm, and get a referral to see a well-trained lymphedema therapist;
2) Drink plenty of fluids -- staying well hydrated helps dilute lymph fluid and keep it moving freely;

3) Elevate the swollen arm or hand as much as possible during the day and on pillows at night; support the arm well so that it doesn't tire;
4) Several times a day pause and do some deep breathing -- this helps stimulate the largest lymph vessels in your body;

5) Raise hands over head as high as is comfortable for you, three times a day, and pump fists 20 times;
6) Call for medical help immediately if you have severe pain, redness, fever or feel ill;

7) You can try mild compression gloves by either Sammons Preston or Isotoner® Fingerless Therapeutic Gloves if your hands and/or fingers are swollen until your appointment with your lymphedema therapist. Be sure to bring them along to your appointment;
8) Do NOT use ACE wraps or any other wraps without the advice of your lymphedema therapist after your evaluation and your treatment plan is scheduled.

Lynda--I love border collies--so smart and challenging, and a gorgeous border collie shelter dog--it doesn't get any better.

Just FYI: here's the NLN guideline on compression garments while flying:

http://www.lymphnet.org/lymphedemaFAQs/positionPapers.htm

It's the second paper down: and if you are "at risk" but don't have lymphedema, the advice is to discuss it with your medical providers. 

What ever you decide: stay hydrated, move around, every so often--raise your arm and pump your fist. 

And enjoy the visit!

Kira

Lynda, sounds like a great visit.

Did she give/sell you a gauntlet--it's recommended that you protect the hand, so as not to push fluid up there with the sleeve. There's an article about it on the LymphaDiva's site:

http://lymphedivas.com/lymphedema/gauntletandsleeve/

Importance of Compression Sleeve and Gauntlet Combination

USE OF GAUNTLETS AND COMPRESSION SLEEVES IN LYMPHEDEMA MANAGEMENT AND PREVENTION

Dr. Andrea Cheville, Associate Professor of Physical Medicine at the Mayo Clinic

Controversy persists regarding the benefits of compression garments in preventing lymphedema. A key stumbling block is the possibility of triggering hand lymphedema when wearing a sleeve without a glove or gauntlet. Compression applied to the arm may reduce lymph flow from the hand. Even a normal lymphatic system works harder to drain lymph from the hand than other parts of the arm. This fact explains why hand lymphedema is often the most challenging to treat and why lymphedema specialists take great pains to prevent it. Concern that compression sleeves may inadvertently trigger hand lymphedema underlies the recommendation to always wear a compression gauntlet or glove with a sleeve.

Most women at risk for lymphedema who have not noted increased arm volume, symptoms, or other indicators of early lymphedema wear their sleeves during activities that increase lymph production. Examples include airplane travel, vigorous aerobic or resistive exercise, and repetitive activities performed in an intense fashion. It is important that women using preventative compression sleeves combine their sleeve with either a gauntlet or glove during such activities. Particular attention should be paid to constriction at the shoulder band, elbow, and wrist crease. Sometimes overlap of a gauntlet and sleeve at the wrist can cause excessive pressure.

For women with established lymphedema the decision to use a gauntlet or glove is based on slightly different considerations. Lymphedema of the upper limb may be distributed in a surprisingly patchy manner. For example, lymphedema may be restricted to the underside of the upper arm or the back of the hand. It goes unsaid that lymphedema is a very individual phenomenon. Many women with lymphedema never note hand involvement despite use of an arm compression sleeve for many years. However, even these women should remain watchful for hand swelling since lymphedema is a dynamic process with the potential to change over time. A quick check for hand edema after engaging in the activities listed above is always warranted. Differences in skin texture or the visibility of bones, veins and tendons may indicate lymphedema. These changes suggest a need to consider some form of hand compression.

Of particular concern are women with lymphedema that plan to begin an exercise program or to significantly increase their activity and do not use hand compression. For these individuals use of hand compression during exertion is crucial until a stable level has been established. At that point a woman may carefully experiment with using a sleeve alone. However, it is always prudent and appropriate to use hand compression during vigorous arm activity. As previously noted, hand lymphedema is more difficult to control than arm lymphedema. The hand's irregular shape, its critical role in daily activities and the difficulty inherent in precisely fitting a gauntlet/glove all contribute to this problem. It is vital that early signs of hand lymphedema be taken seriously and that appropriate modifications are made to a patient's lymphedema maintenance program.

In summary, a gauntlet or glove should be used in conjunction with compression sleeves when used for lymphedema prevention. Women with established lymphedema who have not required hand compression should consider adding a glove or gauntlet in situations that may increase lymph production in their arms. Many patients with lymphedema spend their entire lives well-controlled with use of a sleeve alone. A good comparison to the decision to wear a gauntlet/glove with a sleeve is that it is like buying insurance. The risk of having hand lymphedema is present in all women with arm lymphedema and those at risk. Adding a gauntlet buys some protection against this event and like all insured risk, we do not know who will be helped by the insurance and who might not even need it. Working with physicians and therapists skilled in lymphedema management will ensure that each woman develops a safe and effective compression plan tailored to her unique needs.

Have a great trip, and maybe it was the talk your husband needed to kick the habit!

Kira

Lynda, have a great trip and a great Christmas!

Hope your DH realizes that second hand smoke isn't good for you, and sometimes smokers just need a good reason to quit---your health and his health are excellent reasons. 

Kira

lyndalynda my husband promised he would quit if I was diagnosed with cancer this June. Granted I was pretty sure I had it even before the biopsy. He really does want to quit but still hasn't…

and he knows I will not breathe his smoke. There are times when the wind is so weird that he has to walk on the other side of the street so I don't catch a wiff. No more smoking in car when I'm in it. We never allowed smoking in the house. Yes it's hard to quit. I did it more than 5 years ago. There is no way I going to breathe anyone's second hand smoke, not even my husband's now that I quit.